Dementia and Objectivity ... 2018

The intent of this article is not to define what dementia is .. I am no expert in that area, and I refer the reader to an excellent handbook on the subject, "Remember Me - You Me and Dementia" by Sailesh Mishra, published by Silver Innings (www.silverinnings.in) and other resources. The intent of this article is to share the learning of having dealt with two such situations in the family. While I may be the spokesperson here, all credit goes to my other family members who dealt with those with this condition day to day and acted in the face of family and society resistance.

Objectivity has many definitions, and I shall use the following for the purpose of this article (http://www.dictionary.com/browse/objective):

• not influenced by personal feelings, interpretations, or prejudice; based on facts; unbiased

• intent upon or dealing with things external to the mind rather than with thoughts or feelings, as a person or a book.

We will explore numerous facets of objectivity and put it into a practical context.

1.  Acceptance, and not Denial. After the initial shock of "this may be" one may do diligence to reach a definitive conclusion of "this is" (then, you may continue reading this article), or "this is not." To this day in the 3rd millenium, there exists considerable stigma about this and a strong bias to be in denial. Denial can only shorten the runway for action, leading to panicked decisions in moments of crisis. If the solution is for in-home care or institutional care, families find themselves insufficiently prepared with the alternatives and their reviews
2. Research-based Remedies vs. "Snake Oil" Treatments. While the medical research community is investing heavily in remedies, we know generally that a "cure" is yet to be found. In the absence of a cure, there is a proliferation of unproven, "it can't hurt, if at all, it will only help" treatments. There is a reason I call these "treatments" and not "remedies": there is no proof of success other than irreproducible anecdotal stories. In a state of desperation and panic, there is a tendency on the part of the patients' families to run from pillar to post, and the "snake oils" offer a ready bait! It behooves affected families to conserve their already-thin-stretched resources by not falling for such treatments.
3. Implicit and Explicit Cost. Given that economies of scale have not yet been achieved in India (they have been achieved somewhat in the US) to lower the cost of dementia care, the cost of providing in-home or institutional care remains extremely high. Families of patients considering professional care have to brace for this, potentially indefinite, cash outflow. The "do nothing" scenario has costs, too - impacts on impressionable-age children in the household, the stress on the marriages, inconvenience to neighbors, and the quality of life of everyone around. For families that can afford the professional care costs, it can help to know that that is the price they have paid to save the implicit costs.
4.  Current Information about Facilities. Everyone wants the best facility/solution for the patient in their family. However, due to the paucity of such facilities, a vacancy need not exist in the facility of your choice when the need arises. Secondly, the family may not have complete and current information on all facilities within the geographic and economic scope of the family. When the time comes for a decision, the family can find themselves with sketchy, indirect information about the facilities - the type of care provided, the current fee structure, space availability, and general reviews. It is, hence, necessary for the family to maintain a list of fully vetted facilities. New leads become frequently available, and these need to be qualified per the family's criteria promptly.
5. Overcoming stigma. The family can find itself paralyzed between opposing points of view within the family and in their social environment. Ideally, consensus needs to be strived for within the family, including the patient, if the patient is capable of discussing alternatives and implications on themselves and others. Social stigma from neighbors and other social networks is more difficult to address - this involves a larger number of people on whom one may not have influence. This is where one needs to let the people come around over time, if at all, by seeing the peace brought to the patient as well as others. This constituency is best ignored, and not made a factor in the decision. I do recognize that there can be environments where the ostracizing can be severe and can make day-to-day living unbearable.

I adapt a quote attributed to Einstein: "No problem can be solved from the same consciousness that it exists in." This applies quite well to the problem of dementia management - and I urge those involved to be an objective witness so all aspects of the solution can be unemotionally evaluated.